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Pancreas and Kidney transplant - share experiences

Posted by @charba1 in Transplants, Jul 23, 2011

Does anyone know 

Tags: transplants


Posted by @sophiadelgado, May 17, 2014

I am 26 years old and was added to the kidney pancreas rransplant list on feb 21st 2014 can anhbodh tell me about thier transplant experiences and. Parricularlh thier wait time. J also live in washington and am listed in phoenix whT hppens when yoh geg that call how long dk j have to get thier ty


Posted by @rosemarya, May 18, 2014

Congratulations on being placed on the transplant waiting list! For me, It was a frightening experience because I did not know what I was facing. It was also hopeful, because I knew that my docs were carefully watching over me.
Time seems to moves slowly. In my case, I became very sick and could not do much of anything. I had to really work at getting some exercise, and my husband had to make sure I would eat. I was afraid of the surgery, and afraid that I would not get a transplant in time. So I cried a lot.
Every one's wait is different, and your medical team will be able to answer questions about your particular condition. Ask your questions to them and believe their answers. They know what they are doing and they know about your needs.
When you get the call, you go right away to your transplant center where they get you ready for surgery. Your transplant team will talk to you about how much time you have to get there.
I received a Liver/kidney transplant 5 years ago. And I am doing great! I wish for you to have a successful transplant when the time is right for you.


Posted by @sophiadelgado, May 18, 2014

Thanks so much for your reply my head is just spining with questions.
The doctors told me i might wait up fo one year im just ancious and nervous
cant believe this is happening but. One day i will look back and remembee
this life changing expierience


Posted by @rosemarya, May 18, 2014

I understand what you mean about your head spinning! You sound like you have a good positive attitude, this will help you a lot. You might consider keeping a journal to keep record events/dates that occur during your waiting and eventual transplant. Years from now, it will be interesting to review. It is amazing how much you will forget! I kept one and I am happy I did.


Posted by @sophiadelgado, May 29, 2014

How long did u wait


Posted by @rosemarya, May 29, 2014

I waited 5 1/2 months after I was listed. Waiting times are different for everyone. Organs are very carefully matched to a recipient. So the waiting time is needed for the best organ to become available for you that "matches" you.
I have met people who have waited less time than me, and I have met people who have waited more time than me.
Be patient, and trust that one will be available when you need it.


Posted by @sandras, Thu, Jan 28 at 8:49pm CDT

I am a pancrease transplant receipant any one else on here that has this kind of transplant?

Edited: 01/29/2016 @ 7:01am


Posted by @colleenyoung, Fri, Jan 29 at 7:08am CDT

Hi @sandras,
Welcome to Connect. I'm glad you found us. I moved your message to this thread because I'd like to introduce you to @sophiadelgado and @rosemarya. See their messages about transplant above.

Sandras, when did you have your transplant? How is the recovery going?

Connect Community Director

Edited: 01/29/2016 @ 7:12am


Posted by @colleenyoung, Fri, Jan 29 at 7:11am CDT

I'd also like to tag @bszychow, who posted last Sept that she was on the pancreas transplant list

@bszychow and @sophiadelgado - How are you doing? We'd love to get an update from you both.


Posted by @sophiadelgado, Fri, Jan 29 at 2:14pm CDT

I have transfered to Seattle UW hospital since it is in my region and I am
still waiting


Posted by @colleenyoung, Fri, Jan 29 at 3:44pm CDT

Welcome back @sophiadelgado. How frustrating (not sure which adjective to use here) it must be to wait so long. Did you see this post about getting on multiple transplant lists?

@sandras How long did you have to wait?


Posted by @sandras, Fri, Jan 29 at 9:42pm CDT

I had to wait 1 year to the date.

Edited: 01/30/2016 @ 1:21am


Posted by @colleenyoung, Sun, Jan 31 at 8:25pm CDT

What that year must've been like @sandras. I cannot imagine. But I bet you can imagine how @sophiadelgado must feel. She's been waiting over a year now.

Sophia, I forgot to add the link to the message with information about being on multiple lists. Here you go:

Sandras, how long ago did you have your transplant and how is the recovery going? How are you doing today?


Posted by @sandras, Sun, Jan 31 at 10:40pm CDT

I had my transplant Dec 21, 2013 afer a long long road to recover (i regected 2 times and had many complications) I am now now longer diebattic,free of insuline. It is a miracle that i made it! But i feel so very grateful especially to my doner and his family for giving me a second chance! God bless!


Posted by @bszychow, Sun, Jan 31 at 9:33pm CDT

Hi All, I have only been on the list since 9-11-2015. Got my first call in less than 2 months, but died waiting on a plain. 2 other calls with an EBV Pos. but I am EBV Neg. I am slowly going crazy. I don't know what a year or more would be like?


Posted by @sandras, Sun, Jan 31 at 10:27pm CDT

For a pancrease transplant? Are you a diebettic type 1?


Posted by @sandras, Sun, Jan 31 at 10:32pm CDT

You said "but died being on a plain". What do that mean?


Posted by @bszychow, Mon, Feb 1 at 12:09am CDT

Yes I am type 1 for 40 years, and the pancreas was on a commercial flight that got held up some ware.
I was waiting for it being prepped but its usable time had passed and was not there yet. so it was cancelled.


Posted by @sandras, Mon, Feb 1 at 12:12am CDT

Oh so sorry. To. Here. That


Posted by @sandras, Tue, Feb 2 at 2:10pm CDT

Hi, I waited for a year and also had many calls. It is frustrating but hang
in there! I personally know what is is like to wait.


Posted by @colleenyoung, Fri, Aug 12 at 10:14am CDT

Hi @bszychow @sandras @sophiadelgado,
It's been a while since we've heard from you, so I thought I would check in. Sophia and Bob, would love to get an update. Is the waiting over?
Sandra, how are you doing?


Posted by @sophiadelgado, Fri, Aug 12 at 11:31am CDT

Well about a year ago I lost my job and medical insurance so I was placed
on hold for transplant. I was then referred to the university of Washington
for Transplant since this is in my region. I have been on hold ever since
fighting back and forth with medical insurance I'm to the point now where I
try not to think about Transplant sounds two stressful and everyday life
has its own issues to deal with. But since chosen to not worry so much
about and just living life my kidney function has gone up to 26 percent so
who knows I might not even need one when it's all said and done I'm just
trying to enjoy everything and not street so much. I wish the best of luck
to everyone dealing with kidney issues. PRAY FIRST

Scott likes this

Posted by @bszychow, Fri, Aug 12 at 8:02pm CDT

welcome back.

Glad to know there is some good news in all that mess. I have been through so many jobs and in and out of insurance. one thing I did find was biofeedback in witch I can control some of my body through my mind. no joke it works. now on the list for a year, still waiting. Hope more things start going better for you. keep that positive attitude, it is a big help. Your in my thoughts.


Posted by @rosemarya, Sun, Aug 14 at 6:52pm CDT

@bszychow , time does pass slowly while waiting. And, as if waiting alone is not difficult enough, it sounds like you have endured more than your share of trouble. It also sounds like you have a positive and optimistic outlook. That will help carry you forward. I am happy for you that the biofeedback has been working for you. Our minds and our bodies are capable of amazing accomplishments! Would you be comfortable to share a little about how you used biofeedback? Rosemary


Posted by @colleenyoung, Fri, Aug 12 at 4:02pm CDT

So good to hear from you @sophiadelgado. Sorry that the news isn't better re your transplant wait. But I have to congratulate you on your attitude. Wow! Mind over matter and increasing your liver function. Well done.

@bszychow and @rosemarya will you join me in welcoming Sophia back?


Posted by @rosemarya, Sun, Aug 14 at 6:36pm CDT

@sophiadelgado, In 2014, I replied to you that I "admired your positive attitude". That statement goes double, and even triple today as I am reading your post. I am sorry that you have been facing so many detours of the medical insurance system. It is remarkable that in the midst of this mess, that you have been able to focus on living life, and that your kidney function has actually gone up! Are you on dialysis? My experience was pretty much an emergency event, so I do not have any background in what %function makes dialysis necessary. I want you to know you will be in my prayers. Rosemary


Posted by @sophiadelgado, Sun, Aug 14 at 9:25pm CDT

---------- Forwarded message ---------


Posted by @colleenyoung, Wed, Aug 17 at 11:30am CDT

Hi Sophia - it looks like you tired to post a message in response to Rosemary, but it is blank. Can you please try again?
So glad to hear from you again!


Posted by @ters1993, Sun, Aug 14 at 9:20pm CDT

My husband had a kidney and pancreas transplant at Mayo in 1993. He had a second kidney transplant in 2003 but the original pancreas transplant is still functioning. All his transplant numbers look good. Wondering if there are other transplants this far out from Mayo and would like to compare notes. Feeling blessed but support could help.

Rosemary, Mentor likes this

Posted by @colleenyoung, Wed, Aug 17 at 11:37am CDT

Hi @ters1993, welcome to Connect.
Wow, so great to hear about the longevity of your husband's transplants. We have a few members who are long-time transplant recipients. @rosemarya, I believe you are 7 years and counting, right? @dglass4040 was your transplant 2011?

I'd love to move this conversation to the discussion called Living Life after your Transplant Will you join me there?


Posted by @rosemarya, Thu, Aug 18 at 5:03pm CDT

@ters1993, Welcome to Mayo Connect! And thank you for entering this discussion and sharing your longevity of your husband's transplant. I am a 7 year liver/kidney transplant. People like your husband are an inspiration for me; and especially for those who are on the waiting list to receive an organ. Thank you for sharing hope with us. Rosemary


Posted by @rosemarya, Thu, Aug 18 at 5:14pm CDT

@ters1993, I know of some people who share your longevity with an organ transplant. I am going to try to notify them and ask them to enter this discussion. Before my transplant in 2009, I did not know anyone who even had a transplant. Now I find friends, and friends of friends who have transplanted or who know someone. If anyone out there can add anything about longevity (any organ), please join us. We welcome you to share in this discussion. Rosemary (liver/kidney 2009) enjoying 7 wonderful years!

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